On January 1, 2022, the State of California launched a reparations program in an attempt to respond to its history of operating the largest eugenics/sterilization program in the country. From 1909 – 1979, 20,000 people were forcibly or involuntarily sterilized in the state of California.[1] However, providing reparations in the form of monetary compensation (approximately $25,000) to survivors has been complicated as the state tries to reconcile its past.
Due to incredible, cutting edge advancements in antiretroviral therapies that treat HIV, and pre-exposure prophylactics that reduce transmission rates, people living with HIV have never been so able to exercise their sexual agency, bodily autonomy, and freedom to love. With each passing day, we endeavor to move towards the visions for our collective future imagined by visionaries such as Marsha P. Johnson and her contemporaries at organizations such as ACT UP— visions of liberation for all people living with HIV, and of a world that fully values the dignity, brilliance, and worth of those living with HIV who are most marginalized by racism, transphobia and homophobia, and poverty.
Life-limiting inequities continue to persist in healthcare, community living and justice for people with disabilities.
The Center for Dignity in Healthcare for People with Disabilities (Center for Dignity) focused on the important work of addressing the inequities that persist for people with disabilities in healthcare and their perpetuation due to systemic ableism.
Every person has their own unique and lived experiences. As poet Audre Lorde said, “There is no such thing as a single-issue struggle because we do not live single-issue lives.”
Contact: Leah Smith, Project Director Leah.Smith@cchmc.org
The National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) has awarded the University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD) at Cincinnati Children’s Hospital Medical Center (CCHMC) a Field Initiative (FI) Project Grant to study the impacts of internalized, interpersonal, and systemic ableism in healthcare services and systems.
Christina Eguizabal Love, Psy.D. Director of Health and Language Access Office for Health, Equity, Inclusion, and Diversity (O-HEID) Pediatric Neuropsychologist Kennedy Krieger Institute
In the United States, about 1 out of 5 people speak a language other than English at home,1 which equates to nearly 65 million individuals. Those with Limited English Proficiency (LEP) do not speak English as their primary language and have limited ability to read, speak, write, or understand English.2 Providing language access means ensuring that individuals with LEP can communicate effectively to participate in and receive healthcare, an important component of culturally competent services.3 In fact, Title VI of the Civil Rights Act of 1964 and corresponding regulations, including the Affordable Care Act (ACA), indicate that federal agencies and those receiving federal financial assistance are required to provide meaningful access to services for LEP individuals via trained interpreters, translation services, and more.
The Center for Dignity in Healthcare for People with Disabilities is deeply concerned about the overturning of Roe v Wade and what it means for the control people with disabilities have over their reproductive health. As an organization that is dedicated to addressing healthcare inequities faced by people with disabilities, we know that a more reproductively just system would reduce healthcare inequities among this population.
A recent New York Times article, “When They Warn of Rare Disorders, These Prenatal Tests Are Usually Wrong” by Sarah Kliff, indicates that when cell-free DNA prenatal screening results show that a baby has high chances for some rare genetic conditions, the baby actually does not have the condition 70-90% of the time (a false positive) (2022). Many parents at the other end of the screening results describe the experience as stressful and scary because they weren’t given sufficient information about the accuracy of the tests and the possibility of false positives. Kliff shares that one reason why expectant parents misunderstand the screening tests is because testing labs describe their screening tests as “reliable,” “highly accurate,” etc. in their advertising materials. Moreover, the author asserts that the companies are highly motivated to expand testing so that they can increase profits in a highly lucrative market. Yet, this widening pool of expectant parents who are undergoing testing can leave some parents in the lurch when they don’t receive the counseling and information they need to properly understand the screening tests. Kliff effectively highlights these important issues and presents a strong case for FDA regulation of advertising claims made by testing labs and insurance coverage of independent genetic counseling.
Schools that do not require masking fail to meet the needs of children with disabilities
Based on the rise of the delta variant of COVID-19, and the increasing number of breakthrough infections, the Centers for Disease Control and Prevention (CDC) revised its masking guidance on July 27, 2021. The CDC continues to recommend that people ages 2 and older and those who are not fully vaccinated should wear a mask in indoor public places. In addition, the CDC guidance recommends that fully vaccinated people should wear a mask indoors in public in areas of substantial or high transmission.